Sorry to bother you all

dpete

New member
Hey everyone,

I am sorry to bother you, and please excuse my grammar.

I was browsing the internet on CF, and thought this would be the best place for me to post my question. I am 23 years old and have been dealing with breathing issues for years now, it is just really difficult for me to breath, and i also cough up thick mucus daily anyways what my question is.
I had a sweat test done, which came back as 56 so we had a blood test run and that tests i think for 7 different mutations which came back normal. My Doctor is now just saying i am deconditioned do you think sense the mutation test came back normal she is right? I just feel from the research i have done that the high sweat test, and my symptoms just fit the bill..

Thank you everyone and take care,
Dane
 

dpete

New member
Hey everyone,

I am sorry to bother you, and please excuse my grammar.

I was browsing the internet on CF, and thought this would be the best place for me to post my question. I am 23 years old and have been dealing with breathing issues for years now, it is just really difficult for me to breath, and i also cough up thick mucus daily anyways what my question is.
I had a sweat test done, which came back as 56 so we had a blood test run and that tests i think for 7 different mutations which came back normal. My Doctor is now just saying i am deconditioned do you think sense the mutation test came back normal she is right? I just feel from the research i have done that the high sweat test, and my symptoms just fit the bill..

Thank you everyone and take care,
Dane
 

dpete

New member
Hey everyone,
<br />
<br /> I am sorry to bother you, and please excuse my grammar.
<br />
<br /> I was browsing the internet on CF, and thought this would be the best place for me to post my question. I am 23 years old and have been dealing with breathing issues for years now, it is just really difficult for me to breath, and i also cough up thick mucus daily anyways what my question is.
<br /> I had a sweat test done, which came back as 56 so we had a blood test run and that tests i think for 7 different mutations which came back normal. My Doctor is now just saying i am deconditioned do you think sense the mutation test came back normal she is right? I just feel from the research i have done that the high sweat test, and my symptoms just fit the bill..
<br />
<br />Thank you everyone and take care,
<br />Dane
 

chantelfox

New member
There are hundreds of mutations. So to only test for 7 is not really conclusive. I'd get a second opinion.

<a target=_blank class=ftalternatingbarlinklarge href="http://kidshealth.org/parent/medical/lungs/cf.html#
">http://kidshealth.org/parent/medical/lungs/cf.html#
</a>
"Almost 1,400 different mutations of the CF gene can lead to cystic fibrosis (some mutations cause milder symptoms than others). About 70% of people with CF have the disease because they inherited the mutant gene Delta F508 from both of their parents. This can be detected by genetic testing, which can be done in kids both before and after birth and in adults thinking about starting or enlarging their families."

Hope that helps! Good luck!!
 

chantelfox

New member
There are hundreds of mutations. So to only test for 7 is not really conclusive. I'd get a second opinion.

<a target=_blank class=ftalternatingbarlinklarge href="http://kidshealth.org/parent/medical/lungs/cf.html#
">http://kidshealth.org/parent/medical/lungs/cf.html#
</a>
"Almost 1,400 different mutations of the CF gene can lead to cystic fibrosis (some mutations cause milder symptoms than others). About 70% of people with CF have the disease because they inherited the mutant gene Delta F508 from both of their parents. This can be detected by genetic testing, which can be done in kids both before and after birth and in adults thinking about starting or enlarging their families."

Hope that helps! Good luck!!
 

chantelfox

New member
There are hundreds of mutations. So to only test for 7 is not really conclusive. I'd get a second opinion.
<br />
<br /><a target=_blank class=ftalternatingbarlinklarge href="http://kidshealth.org/parent/medical/lungs/cf.html#
">http://kidshealth.org/parent/medical/lungs/cf.html#
</a><br />
<br />"Almost 1,400 different mutations of the CF gene can lead to cystic fibrosis (some mutations cause milder symptoms than others). About 70% of people with CF have the disease because they inherited the mutant gene Delta F508 from both of their parents. This can be detected by genetic testing, which can be done in kids both before and after birth and in adults thinking about starting or enlarging their families."
<br />
<br />Hope that helps! Good luck!!
 
W

windex125

Guest
I wld as well, causee with the thick mucus issues alone I wld be concerned. I've posted many times that I was diagnosed at birth and then undiagnosed at age 8 and went all those years without treament. finally in my late 30's got a definite diag. with what is called a nasal chloride test. Please persuade this. Your lungs will get dramically worse from the mucus buildup as the years progress and you simply cannot reverse that damage. Pat-56/CF
 
W

windex125

Guest
I wld as well, causee with the thick mucus issues alone I wld be concerned. I've posted many times that I was diagnosed at birth and then undiagnosed at age 8 and went all those years without treament. finally in my late 30's got a definite diag. with what is called a nasal chloride test. Please persuade this. Your lungs will get dramically worse from the mucus buildup as the years progress and you simply cannot reverse that damage. Pat-56/CF
 
W

windex125

Guest
I wld as well, causee with the thick mucus issues alone I wld be concerned. I've posted many times that I was diagnosed at birth and then undiagnosed at age 8 and went all those years without treament. finally in my late 30's got a definite diag. with what is called a nasal chloride test. Please persuade this. Your lungs will get dramically worse from the mucus buildup as the years progress and you simply cannot reverse that damage. Pat-56/CF
 
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